Wednesday, January 22, 2014

Reconsidering Jerks

(This was written and shared in November of 2012 after Julia was first diagnosed with a new type of seizure. One year, three months and two drugs later we are headed back in to the hospital to see how things are looking...Very rarely do we get to see with absolute clarity how what we considered to be a burden is actually a blessing. This was one of those rare moments and I think it is important to remember...)

November 30, 2012:I’m aware I have been a facebook posting maniac this week with Julia in the hospital. The casual FB observer may be thinking to themselves “enough already lady, get a life!” To which I would respond “I agree.” But I feel compelled, mostly out of gratitude, to summarize what I think happened this week.

For over a year Julia has been having these sharp jerks which we thought were seizures – we would increase her medicine, they would stop, they would return, up medicine, jerks stop,jerks return, etc… They would not leave us alone! We decided it was time to take a look at these jerks on an EEG before adding our next medication, so an inpatient EEG was scheduled and we started praying the jerks would show during the EEG for Julia’s doctor to analyze. EEG’s are hard for all kiddos – and for a child like Julia who doesn’t understand what is happening and has major sensory issues, an EEG is torture. So for this visit Julia had to be sedated first, then hooked up, then kept from ripping out the cords for the duration of the visit – not an easy procedure for her, thus making us even more anxiously hopeful that going through this would be meaningful and we wouldn’t be putting her through such a stressful ordeal for nothing.Once she was hooked up and recovered from the anesthesia we were just praying for the jerks to start…but nothing. When the doctor came to see us in the morning after her first night we were so bummed, “no jerks yet…” we said, but she surprised us by telling us they had discovered something else overnight that had not been on any of Julia’s prior EEG’s, a new type of seizure, basically an all night seizure in her sleep (called ESES). This is a non convulsive seizure so we would have NEVER known she was having them. She looks like she is peacefully sleeping but really her brain goes into an electrical firestorm keeping her from getting any good sleep 95% of the time. This could have been happening for over a year, maybe 2 given how long it had been since her last EEG, our poor girl. And we never would have known had we not come in to look at those jerks…Those jerks. The jerks I have cursed for the past year, prayed would stop, pleaded with God to take them away from her. Those jerks that would not leave us alone, that relentlessly returned time after time. Those blasted jerks were now our heroes… And I am left with the thought, how much of my life am I cursing, thinking is an affliction when instead it could be my life preserver? I don’t mean to preach, but for me this has been such a spiritually humbling week of going from "why God why?" To "thank you, thank you, thank you." We rarely get these ah-ha moments when what has been so painful to us reveals itself as a blessing – but when we do I think we should take a moment to think about them. Because more often what is painful continues to be painful, what is confusing stays confusing. No “ah-ha”, no “oh now I get it” – more often than not we must endure and try to have faith – and this is why faith is hard, and this why faith is greatly rewarded. Our human reaction says “this is wrong and should not be happening,” but our Father who loves us and wants good for us says “Trust me.” For me this week I was just reminded that this is the type of faith I need to have and want to have in all things – whether what is happening makes sense in my limited perspective or not.

So, the doctor was able to start treatment right away on these new seizures for Julia and she had a remarkable response the first night to her new medication. We have so much hope that good sleep will be life changing for our little lady – and as for those jerks? Well they showed up right before the EEG tech came to take the leads off of Julia – and ya know what, they aren’t seizures. I don’t know what they are. A movement disorder, a twitch, the result of sleep deprivation… I don’t know what they are, but I know now they were not the curse I considered them to be, they were a blessing and they are causing me to reconsider some of the other “jerks” in my life that might possibly be misunderstood blessings as well.